Test results and decoupling from my “sick girl” identity

I got a test done at UTSW the other day called an EMG. Basically, they stuck needles in my arms and legs and ran electrical current through it, which measures my nerve and muscle function.

Long story short, other than some neuropathy in my feet, I’m more or less normal. This is good news in terms of disease progression.

I also had a whole bunch of blood tests done and all of that was normal too, except that my vitamin D level is barely above the minimum. That’s a bit concerning because I take supplements in fairly high doses.

Yet I also noticed that I was strangely a bit disappointed by the results, which I found interesting.

I guess part of it is that I wanted the test results to be more abnormal because then it would explain some of the symptoms I’m experiencing. Being more or less “normal” is almost disappointing in that it still leaves me without any good answers.

At the same time, I always say that I don’t want my identity to be the “sick girl.” I feel sorry for people who have that mindset, but not for the reasons they want me to feel sorry for them. More, I wish they could stop focusing so much on their suffering and learn how to live with it. In my experience, the more focused you are on your suffering, the more you’re going to suffer.

Sometimes it feels like a fine line to walk between wanting to live as though I’m normal and wanting to have my suffering validated.

But ultimately, it’s very good news that my disease isn’t progressing rapidly. It means that although I’m likely to outlive my husband and that will be miserable in many ways to go through the rest of my life alone, it also suggests that I’m not likely to just suddenly die after he does. With the two diseases I have both having largely unknown outcomes, I guess I can cling to hope that even though I feel worse, I’m not actually worse based on medical testing.

I should probably try to exercise more so that I can regain and maintain my strength. It looks like I’m probably going to be around for a while longer.

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